James and Sara’s story

acd resource learning together 131

‘You get over one hurdle, there’s something else that’s going to arise, sooner or later. You’ve just got to maintain your optimism, I guess. Aim high, because you’ve got nothing to lose, and everything to gain.’

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An unusual approach

James: Daisy started off at a special development school, and within a fairly short period of time we decided that it wasn’t going to deliver the best outcomes for her. We wanted to combine being able to deliver an Applied Behavioural Analysis (ABA) program in a mainstream school setting, with people that had suitable training.

Sara: Daisy developed all her language from ABA. Up until [we found ABA] I didn’t really know whether she would ever know that a table was a table, or could tell me that that was a table. She now understands quite a lot of language, but she has difficulty expressing herself. She has maybe 100 or so words she can use [at age 21].

James: We looked in our local area first of all, because close to home was obviously easiest. And we’d heard that this one school close to us already had several children who had integration aides, and that they had an integration officer.

Sara: We did want a school as close to home as possible, because then you have much more of a chance that kids will want to come over. We just went in and said, ‘We wanted Daisy to come here’. We wanted to use our own aides, and deliver ABA as an education for our daughter in their classroom. And they were really really positive.

Then we discovered that her funding didn’t allow for that.


Tips for filling in the Educational Needs Questionnaire

James: When you are looking at going to school, you have to fill in an educational needs questionnaire. When we filled in the form, we were at the special school with the principal helping us. And it was with the thought that Daisy would be going to the specialist school.

In the safety bracket of the educational needs questionnaire, because Daisy was going to a specialist school, we put a ‘2’, because she was in an enclosed yard. Whereas she could have been a ‘4’ – which is what she needed to be if she was at the mainstream school, because the gates are open. And we didn’t put that high enough, so when her score came back, and her level of funding was allocated, she didn’t have enough to go a mainstream school.

Once they have given you an amount, and you want it increased, it’s going to be an uphill battle. And so then, what we had do was write a letter to the education department.

So when you’re filling out the educational needs questionnaire, I think you have to be aware that it’s looking at the child’s deficits, and not their strengths. You have to go into it with a fairly open mind, and be aware that maybe your situation is going to change. You need to be thinking about worst-case scenarios. And you’re always wanting to portray your child in the best light. That’s just human nature as a parent.


Why we wanted a mainstream environment

Sara: I wanted her to be – and I still do – to be with people. Peer appropriate people. Just in the playground with kids that are talking to her. It will give her much more of a chance to talk back. You know, the aides that we had with her were young and the other kids would gravitate to them, and therefore Daisy. And they all loved her. They’d want to help her in the classroom. It was amazing.

James: Daisy was really considered part of the school community. And this didn’t only happen inside the school, but also outside of the school as well.

James: We identified relatively early that ABA was going to work for Daisy [and] that Daisy really needed one-on-one integration support to get the best sort of outcomes. We also needed a school that was really adaptive and flexible, and going to work with us as parents. And we also figured out that we needed to find our own integration aides, so that they would be totally on board with our program. And we were lucky enough to put all of those different things together. I guess the principal also is really really important too.

We were really lucky to get all those different factors combining together. And so Daisy’s primary school education was something we look back on with a great degree of fondness, and as being a really really positive time for Daisy. Where she had an opportunity to develop and flourish.


Employing our own aides

Sara: It was important for us to employ our own aides because we needed people who could deliver an ABA program for a start. We also wanted younger females, just because it worked better with them helping Daisy in the playground, as well as helping her to go to the bathroom – all those things.

What we did was, the people that we employed were also employed through the Council, and came into the home on the weekends. So what she learned at school could be carried over into home as well. And that was really important. Luckily the Council were up for it, and so were the school.

James: We would usually run an ad on one of the local university websites, and we’d go into a reasonable amount of detail about our daughter. And we’d provide them with details about the potential job. We’d get a series of applicants that all put in their CVs, and we’d just go through the normal process of looking at people’s CVs, and drawing up a shortlist. And then we’d interview them personally, maybe give them a phone call first. And then we would go to the school with our selected candidate.

Sara: And they basically would say ‘yes’ when we’d decided on somebody. They were fantastic.

James: And the school would employ them as an integration aide. This was very successful for us, because we would have a say and a choice in the type of worker that Daisy was going to be getting. The type of students we used to attract would be predominantly psychology students, or maybe occupational therapy students, speech therapy students. Um, so those sorts of professions where you maybe training, or have interest in children with special needs.

Sara: So it helped them as well, it was good for extending their education too.

It wasn’t all plain sailing. In the beginning, as in lots of things, it was much more difficult. As it went along it became easier. In the beginning we’d have people lined up to go down to the school, or they’d even start, and then they’d pull out. But in the end, we ended up having workers that stayed for four and five years. So you just have to not be completely blown away if something doesn’t go according to plan. You just start again with someone else.

James: When you’re trying to do something like this, to employ your own staff effectively, there are always going to be hiccups and problems along the way. But the benefits far outweighed the disadvantages, because you can develop a relationship with these people.

Sara: But I wanted it to work in the beginning, because I wanted the school not to flip out, because it wasn’t working. And that’s when we had the most problems. But then it resolved, and everybody came on board, and it worked out perfectly – in the end. Didn’t it?

James: Pretty much (laughs).


A great primary school experience

James: The school concerts, they were just fantastic. They were just so delightful, so joyful. And to see Daisy up there on the stage with her peers, and with assistance, you know, doing little performances, was just fantastic. And those times where Daisy would get invited to a party, to a birthday party. And Daisy would go along, and she’d be into it for a while, and then she’d sort of drift away. But just the fact that she was included was really fantastic.

And sometimes I would go along, and Sara would go along to pick her up, and you’d look into the school playground and see Daisy outside. And Daisy would be there with her integration aide, surrounded by a pack of kids. So there were some really nice experiences that made it all worthwhile. We’re not going to pretend it wasn’t hard work, but it was definitely worthwhile.

It was worthwhile because Daisy’s educational outcomes were vastly improved by delivering an ABA program within a mainstream setting, and also improved because Daisy was exposed to a whole range of experiences and friendships and association that she otherwise wouldn’t have been.

Sara: it’s really important that you have the backing of the principal. But sometimes you can have the backing of the principal and it still can be a struggle. It was hard in the beginning, but gradually it became easier as they saw how it worked. Don’t you think?

James: Well, I think what we were trying to do was something that doesn’t get done particularly often. Delivering your own education program to your child in a mainstream setting, with your own integration aides, is pretty unusual.


Our relationship with the school

Sara: The relationship with the principal was really important at the primary school. The three of us hit it off really well. If there was a problem we’d go in –or I would – and she’d say, ‘Don’t worry, it will be okay’.

Sara: No problem was going to be insurmountable with her. She made it a lot easier. And I think she also took care about who she put us with – the teachers that she chose for Daisy, to be in that class. They had to want Daisy to be there, and she didn’t make anybody take her, who thought they couldn’t do it. But if there were problems, it wasn’t a big deal. If I was spinning out, she just calmed me down.

James: I think the principal worked really well with us, because the principal had some faith in us. The principal understood that we knew what we were trying to achieve with our daughter.

Sara: Oh yeah, a clear goal.

James: Yeah, we had a clear vision, and a clear goal for Daisy throughout her primary school education. The principal had faith in us, and we had faith in her. And at the beginning of each year, we’d sit down and she’d say, ‘Well, I’ve got a couple of teachers in mind for Daisy this year, what do you think?’ And we’d have a chat about it.

We had regular meetings, probably about once a month, where we’d go and meet the principal, and just discuss how Daisy was going. Usually it was just pretty casual and informal, but it was an opportunity for us to just bring up any problems that we were having. And likewise, sometime we’d just learn some information from her about what was going on with Daisy in the school. So that was important, having regular meetings and regular contacts.

But she had a pretty much open door policy, so she was always accessible. So that was really helpful too. We didn’t often have problems, but occasionally they would arise. Sometimes we might have, just little practical issues, like with our integration aides, with them changing over. So we’d have the situation with the new aide doing a shadow shift with the old aide, and we’d have issues with training them up, sending them on ABA courses. But the school was very flexible with that, and that was very helpful. Because we’d have to send them on training courses before they started working with Daisy. And the school was very helpful and accommodating.


Moving the approach into secondary school

Sara: When we approached the secondary school, we basically did the same as we did with the primary school, and the principal was really fantastic and on board as well, wasn’t she?

James: Yeah, she was really positive, because that school had an extensive integration program.

Sara: But we have to say that at that school, and at the primary school Daisy was by far and away the most needy kid that they’d had, or ever had.

James: Yeah, Daisy’s level of need is reasonably high. So we had to convince them that we knew enough about what we were doing for them to be successful to take Daisy into their integration program. We had the positive experience of five years of primary school with Daisy. So when we went to the secondary school, we could relay those stories to the principal.

Sara: A friend of ours said that (laughs) they were at the mainstream school for some reason, and all the kids were queued up for lunch. And Daisy came scrambling through, and pushing everybody out of the way. And everybody would turn around and say, ‘Oh, that’s just Daisy’. Which is like, fantastic! And what you want. Because she can’t wait! She went to the front of the queue, and all the kids just went, ‘Oh, that’s just Daze, that’s fine’.

James: It’s definitely a two-way thing, Daisy going to a mainstream high school. She became part of that community. She’s very recognizable. She’s small, she’s slight, she floats around, yet she’s quite physical. So she was definitely one of the students that most other kids in the school knew. They knew Daisy, or knew of her. So that was a really nice thing, that she was just accepted by the other students, you know? It wasn’t anything special.

Sara: And her brother was there, and he’d bump into her. And his friends all knew her. It was just really nice that she’d be part of all that.


The shift to dual enrolment

James: After Daisy’s first year at high school, we decided that looking at a dual enrolment was a possibility. We’d had some troubles with the high school, in terms of getting them totally on board with Daisy’s program.

Daisy ended up going to the mainstream school two days a week, and the special school three days a week. We were hoping that by doing the dual enrolment, we’d have the benefits of Daisy getting appropriate peer group modeling, and doing some ABA in the mainstream school. And that by going to the specialist school, she would be provided with some more practical skills, where there are specialist teachers who are accustomed to dealing with children with disabilities. So she’d get the best of both worlds. And this worked to a greater or lesser degree.

Sara: They worked on life skills, and had a little cottage. They learned to make their bed and brush their hair and all that sort of stuff.


Communication with different schools

James: We’ve always managed Daisy quite directly, and her involvement with school, or whatever programs she’s been involved with.

Sara: We’ve always driven her and picked her up, and so I do a lot of talking to everyone. I want to know what happened there. I want to know what she did, and who she did it with. If she just goes on a bus and comes back, it’s like sending her out into a black hole, and I don’t know. When I’d got to the high school to pick her up, I’d see the aide, and I’d get the low down on what had happened. Or I’d speak to the teacher.

James: Communication books that are used can be helpful, but they’re only helpful in so much as they’ve got to be filled in effectively by the person.

Sara: Oh, but anyway, I’d get stories like, ‘Daisy had a great day today’, and then I’ll find out that she had a great day, but she whacked two people. And I’m like – I don’t actually see that as a great day in that case. And I’d like to know what happened. I know it’s easier for James and I, because James went to work, and I was able to, go and manage all that, and go and interrogate everybody! (laughs) and find out exactly what did happen.


It’s always worth giving things a try

James: There’s always going to be obstacles, you know, it’s just a reflection of life. And I guess we’ve always just been of the feeling that we’ve got to give it a try. You know, whatever it is that we, whatever we can, to improve Daisy’s outcomes. So you know, we’ve been pretty – how can I say?

Sara: Committed?

James: Yeah, committed. Daisy doesn’t have her own voice. So we’ve always taken the position that we have to speak for Daisy. We think we know what’s going to be best for Daisy, to improve her outcomes. And so we’ve never hesitated about speaking up for Daisy.

Sara and I are quite different in personality, in our natures. Sara is very much a lateral thinker, and I’m pretty much a linear thinker. But we complement each other, and so that sort of teamwork thing is a really important thing. And even though we sometimes lock heads, lock horns, we still work together – in the end – work together really really well.

Sara will come up with some of the ideas and the strategies, and then sends me in to carry them out sometimes. (Sara laughs) … And that teamwork thing is really important. It’s so much easier if there’s two of you working together. So that’s been I think to our benefit, throughout our journey, that we’ve been able to work together.

Sara: Well, things that I mind doing, Jimmy mightn’t mind doing, and vice versa. There’s some things that I just plainly couldn’t do. If I had to ring up a politician or something, I couldn’t do it. And in the beginning I couldn’t write letters, but I can now.

James: Yeah, you’re pretty good.


Learn to write really good letters

James: On several occasions we felt that we are at a stumbling block – whether it was the education department, or the department of human services, or whoever. So we started to write a few letters. We’ve written quite a few letters over our time with Daisy. So we’ve always felt that because Daisy doesn’t have her own voice, we need to speak up for her.

Sara: And for ourselves.

James: And for ourselves too, that’s right. Because we’ve got needs that have to be, you know, looked at and considered too. So yeah, we’ve always found that letter has been quite a powerful tool.

Sara: I think the letters have been really effective. I think our letter writing has become much better. And we’ve achieved what we wanted.

James: Yeah. I really don’t think you can underplay the importance of letter-writing skills in … but you need to be reasonably concise when you’re writing a letter [but you also] need to be telling a compelling story. You need to be giving the reader of the letter a sense that there’s really something seriously wrong going on here – something that needs to be fixed. We don’t write these letters out of a casual notion.

Sara: They’re time-consuming and they’re energy-draining, and if you didn’t have to do it, it would be great. So you don’t take it on lightly. You do it when you need to.

I think I found it much easier to write a letter when I finally decided that I would write how I felt, and about how it was affecting me, and my story. Everything that I’m feeling. Once I started writing like that, I was able to write letter. And then Jimmy can put bits in, or edit mine. It needed to be! (laughs)

James: Sometimes we’d edit a bit of the emotional content out, yes! (laughs)

We wouldn’t have got to the position where we are with Daisy without writing letters. Virtually every significant outcome that we’ve had for Daisy has been as a result of writing letters. You can’t underplay its importance. It’s a lot of energy that you expend in putting them together. But also the act of letter-writing often helps to crystallize something in your own mind.


Keeping records as you go

Sara: I also think it’s also good to write everything down as you’re going along, because there will come a time when you need to write the letter, and if you’ve already got it written down, then it’s much easier to formulate what you want to say.

James: We’ve got our own files on Daisy that are quite extensive. So I think it’s really important, just for your ongoing use, keep your files together about your child in the one place. And yeah, document as much as you can. I think that’s important because it really helps in putting together a strong case for a particular problem.

Aiming high, and maintaining our optimism

James: Aim high, because you’ve got nothing to lose, and everything to gain. Every child, every human being has amazing potential. And who knows what Daisy’s is? We’ve got no idea. But we’ve never tried to limit her potential by saying, ‘Oh no no, she could never do that’, because that’s not helpful. Always be optimistic and be looking at the things she might be able to do, rather than not ­– what she can’t do.

You know, you get over one hurdle, there’s something else that’s going to arise, sooner or later. You’ve just got to maintain your optimism I guess. We’ve always been optimistic about Daisy because she’s worthwhile. She’s fantastic. She’s an incredible individual, and we believe in her – in her ability to keep on learning, and even though she’s an adult now, we really believe that she can learn, and she has so much potential.


Making time for fun and friendship

James: Daisy’s been going riding with riding for the disabled for at least 10 years now. Daisy’s really enjoyed riding right from the beginning, and got a lot out of it. Just recently she’s been learning how to rise to the trot, which is a really nice thing. And just the people who are in our group, they’ve become like our de facto parent support group. We’ve never really been into formal support groups much – it’s just not been our bag. But these bunch have become like a bunch of just really good friends, where we can just let our hair down.

And we know each other’s kids really really well, and it’s just so accepting and we have so much fun together, and all of our kids’ different eccentricities are embraced. And we can just get together and have a good time, and a good life. It’s a really important thing. You need to have something where you can speak to other people about your kids, because they are unusual, and they have problems, and it causes lots of different grief and turmoil. But they’re amazing as well, and something like this really helps to celebrate that.